Register connects stroke survivors with trials

Dec 20 2016

Hunter Stroke Research Volunteer Register team

Stroke survivors in the Hunter will get easier access to new clinical trials following the launch of a new volunteer register at the Hunter Medical Research Institute (HMRI).

Each year around 1700 people in the region suffer a stroke, over a third of whom are left with physical impairment. Despite this growing number, researchers often find it difficult to recruit for studies aiming to prevent strokes and improve rehabilitation.

The Hunter Stroke Research Volunteer Register (HSRVR) comprises a centralised database of people keen to participate in cutting-edge stroke research. Coordinator Gillian Mason says it will save considerable time and money for researchers while keeping more patients ‘in the loop’.

“Recruitment for different trials, especially involving stroke recovery, has been somewhat disjointed because it largely depends on individual relationships within the hospital system,” Ms Mason says. “It results in researchers spending many months recruiting for their study, and the trial sample might not be fully representative.

“At the same time, from my perspective as a physiotherapist, there are lots of people who would join trials but aren’t aware of what’s available. Our ultimate vision is to give everyone in the Hunter Valley access to research studies if they want it.”

The stroke-focused Register will complement the long-running HMRI Research Register that provides volunteers – including healthy ‘controls’ – for a broad cross-section of diseases.

Stroke trials currently underway or planned include those aiming to reduce stroke risk, improve fatigue levels, understand and improve activity levels and arm function, or target degenerative decline following stroke.

“Many people don’t immediately think of joining a clinical trial because they’re intent on getting better and are perhaps overwhelmed with the rehabilitation work they need to do,” Ms Mason adds. “But joining the Register will mean they’re notified down the track when a suitable trial comes up – they can always say no, but they won’t miss out on opportunities.”

The HSRVR is operating within the John Hunter Hospital Acute Stroke Ward, Rankin Park Rehabilitation Centre, Stroke/TIA clinic and the Community Stroke Team.

The research team comprises HMRI Director Professor Michael Nilsson, Associate Professor Coralie English as lead investigator, Associate Professor Michael Pollack and Associate Professor Rohan Walker, along with Gillian Mason and Monique Hourn.

Click here for further details, email or phone Gillian Mason on (02) 4042 0093.